Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

25-01-2016 | Original Paper

Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

Auteurs: Kaaren Haas, Debra Costley, Marita Falkmer, Amanda Richdale, Kate Sofronoff, Torbjörn Falkmer

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 5/2016

Abstract

Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and their carers. Common and differentiating factors influencing the research participation of participants are identified and discussed. Factors influencing participation were found to differ both between and within participant categories. We propose a dichotomy whereby factors influencing research participation can be classified as those arising from a participant’s values, which act as either a motivator or a deterrent; and those based on convenience, which act as either an enabler or inhibitor. These findings are applicable to research studies that seek to recruit adults with ASD as participants.

vorige artikel Do Individuals with High-Functioning Autism Who Speak a Tone Language Show Intonation Deficits?

volgende artikel Social Tools And Rules for Teens (The START Program): Program Description and Preliminary Outcomes of an Experiential Socialization Intervention for Adolescents with Autism Spectrum Disorder

Alleen toegankelijk voor geautoriseerde gebruikers

Inhibitors can also be properly described as ‘barriers’.

Balfe, M., & Tantam, D. (2010). A descriptive social and health profile of a community sample of adults and adolescents with Asperger syndrome. BMC Research Notes, 3(300), 1–7.

Baron-Cohen, S. (2000). Theory of mind and autism: A review. In L. M. Glidden (Ed.), International review of research in mental retardation (Vol. 23, pp. 169–184). Cambridge: Academic Press.

Barton, C. A., May, C., Mészáros, D., Matheson, M. C., Jenkins, M., Giles, G., et al. (2012). Reasons for ongoing participation in a longitudinal cohort study. Australian and New Zealand Journal of Public Health, 36(4), 397–398.CrossRef

Beadle-Brown, J., Ryan, S., Windle, K., Holder, J., Turnpenny, A., Smith, N., Richardson, L., & Whelton, B. (2012). Engagement of people with long-term conditions in health and social care research: Barriers and facilitators to capturing the views of seldom-heard populations. (Discussion Paper 2850): Quality and Outcomes of Person-centred Care Policy Research Unit.

Bell, K. (2013). Participants’ motivations and co-construction of the qualitative research process. Qualitative Social Work, 12(4), 523–539.CrossRef

Bonk, J. (2010). A road map for the recruitment and retention of older adult participants for longitudinal studies. Journal of the American Geriatrics Society, 58(2), 303–307.CrossRef

Brodaty, H., Gibson, L. H., Waine, M. L., Shell, A. M., Lilian, R., & Pond, C. D. (2013). Research in general practice: A survey of incentives and disincentives for research participation. Mental Health in Family Medicine, 10(3), 163–173.PubMedPubMedCentral

Cederlund, M., Hagberg, B., Billstedt, E., Gillberg, I. C., & Gillberg, C. (2008). Asperger syndrome and autism: A comparative longitudinal follow-up study more than 5 years after original diagnosis. Journal of Autism and Developmental Disorders, 38(1), 72–85.CrossRefPubMed

Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Thousand Oaks: Sage.

Clark, T. O. M. (2010). On ‘being researched’: Why do people engage with qualitative research? Qualitative Research, 10(4), 399–419.CrossRef

Cleaver, S., Ouellette-Kuntz, H., & Sakar, A. (2010). Participation in intellectual disability research: A review of 20 years of studies. Journal of Intellectual Disability Research, 54(3), 187–193.CrossRefPubMed

Derguy, C., Michel, G., M’bailara, K., Roux, S., & Bouvard, M. (2015). Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Journal of Intellectual and Developmental Disability, 40(2), 156–166.CrossRef

Fry, C. L. (2008). Research participation and internal normativity: Understanding why people participate. The American Journal of Bioethics, 8(10), 43–44.CrossRefPubMed

Gerber, F., Bessero, S., Robbiani, B., Courvoisier, D. S., Baud, M. A., Traoré, M.-C., et al. (2011). Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: outcomes of challenging behaviour and quality of life. Journal of Intellectual Disability Research, 55(9), 918–932.CrossRefPubMed

Guest, G., MacQueen, K. M., & Namey, E. E. (2011). Applied thematic analysis. Thousand Oaks: Sage.

Haas, K., Costley, D., Falkmer, M., Richdale, A., Sofronoff, K., & Falkmer, T. (2014). Optimising the recruitment and retention of adults for longitudinal autism research: A mixed methods study. Brisbane: Cooperative Research Centre for Living with Autism. http://www.autismcrc.com.au/reports.

Harrington, C., Foster, M., Rodger, S., & Ashburner, J. (2014). Engaging young people with Autism Spectrum Disorder in research interviews. British Journal of Learning Disabilities, 42(2), 153–161.CrossRef

Howlin, P. (2005). Outcomes in autism spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., Vol. 1: Diagnosis, development, neurobiology, and behavior, pp. 201–220).

Hunter, J., Corcoran, K., Leeder, S., & Phelps, K. (2012). Appealing to altruism is not enough: Motivators for participating in health services research. Journal of Empirical Research on Human Research Ethics, 7(3), 84–90.CrossRefPubMed

Kirkland, S. A., Raina, P. S., Wolfson, C., Strople, G., Kits, O., Dukeshire, S., et al. (2009). Exploring the acceptability and feasibility of conducting a large longitudinal population-based study in Canada. Canadian Journal of Aging, 28(3), 231–242.CrossRef

Lennox, N., Taylor, M., Rey-Conde, T., Bain, C., Purdie, D. M., & Boyle, F. (2005). Beating the barriers: Recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research: JIDR, 49(4), 296–305.CrossRefPubMed

Leonard, N. R., Lester, P., Rotheram-Borus, M. J., Mattes, K., Gwadz, M., & Ferns, B. (2003). Successful recruitment and retention of participants in longitudinal behavioural research. AIDS Education and Prevention, 15(3), 269.CrossRefPubMed

MacLeod, A. G., Lewis, A., & Robertson, C. (2014). ‘CHARLIE: PLEASE RESPOND!’ Using a participatory methodology with individuals on the autism spectrum. International Journal of Research and Method in Education, 37(4), 407–420.CrossRef

Madriaga, M. (2010). ‘I avoid pubs and the student union like the plague’: Students with Asperger Syndrome and their negotiation of university spaces. Children’s Geographies, 8(1), 39–50.CrossRef

Magiati, I., Tay, X. W., & Howlin, P. (2014). Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: A systematic review of longitudinal follow-up studies in adulthood. Clinical Psychology Review, 34(1), 73–86.CrossRefPubMed

Mapstone, J., Elbourne, D., & Roberts, I. (2007). Strategies to improve recruitment to research studies (Review). Cochrane Database of Systematic Reviews, Issue 2, Art No MR000013.

Marcantonio, E. R., Aneja, J., Jones, R. N., Alsop, D. C., Fong, T. G., Crosby, G. J., et al. (2008). Maximizing clinical research participation in vulnerable older persons: Identification of barriers and motivators. Journal of the American Geriatrics Society, 56(8), 1522–1527.CrossRefPubMedPubMedCentral

Marcus, B., & Schütz, A. (2005). Who are the people reluctant to participate in research? Personality correlates of four different types of nonresponse as inferred from self- and observer ratings. Journal of Personality, 73(4), 959–984.CrossRefPubMed

Mazefsky, C. A., & White, S. W. (2014). Adults with autism. In F. R. Volkmar, R. Paul, S. J. Rogers, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (4th ed.). New York: Wiley.

Mein, G., Seale, C., Rice, H., Johal, S., Ashcroft, R. E., Ellison, G., & Tinker, A. (2012). Altruism and participation in longitudinal health research? Insights from the Whitehall II Study. Social Science and Medicine, 75(12), 2345–2352.CrossRefPubMed

Nicholson, L., Colyer, M., & Cooper, S. A. (2013). Recruitment to intellectual disability research: A qualitative study. Journal of Intellectual Disability Research, 57(7), 647–656.CrossRefPubMed

Ouellette-Kuntz, H., Lunsky, Y., Lysaght, R., Martin, L., & Saaltink, R. (2013). Partnering for research in the field of intellectual/developmental disabilities—Lessons for participant recruitment. Journal on Developmental Disabilities, 19(2), 25–35.

Robinson, K. A., Dennison, C. R., Wayman, D. M., Pronovost, P. J., & Needham, D. M. (2007). Systematic review identifies number of strategies important for retaining study participants. Journal of Clinical Epidemiology, 60(8), 757–765.CrossRefPubMedPubMedCentral

Thompson, S., & Phillips, D. (2007). Reaching and engaging hard-to-reach populations with a high proportion of nonassociative members. Qualitative Health Research, 17, 1292–1303.CrossRefPubMed

Tishler, C. L., & Bartholomae, S. (2002). The recruitment of normal healthy volunteers: A review of the literature on the use of financial incentives. Journal of Clinical Pharmacology, 42, 365–375.CrossRefPubMed

Titel: Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders
Auteurs: Kaaren Haas
Debra Costley
Marita Falkmer
Amanda Richdale
Kate Sofronoff
Torbjörn Falkmer
Publicatiedatum: 25-01-2016
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 5/2016
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-016-2708-6

Andere artikelen Uitgave 5/2016

Change in the Behavioral Phenotype of Adolescents and Adults with FXS: Role of the Family Environment

Original Paper

The “Eye Avoidance” Hypothesis of Autism Face Processing

Perception In Autism

Hoarding in Youth with Autism Spectrum Disorders and Anxiety: Incidence, Clinical Correlates, and Behavioral Treatment Response

Original Paper

Prevalence of Autism Spectrum Disorders in Guanajuato, Mexico: The Leon survey

Original Paper

Exploring What’s Missing: What Do Target Absent Trials Reveal About Autism Search Superiority?

Original Paper

Does WISC-IV Underestimate the Intelligence of Autistic Children?

Perception In Autism